Dental Tips for Scleroderma & Why I Love Working With Students

Day 21 of Wego Health’s NHPBM Bonus Prompt: Raise Awareness

Scleroderma

&

Dental Health

 

I have not been able to keep up with the 30 day 30 in 30 for Wego Health for a few reasons, but one is I recently had some dental surgery.  Last monday, I underwent a Connective Tissue/Gum Graft.  This is my third.  Yes, you read that correctly.  So for those of you doing dental searches on dental issues with scleroderma, those graphic pictures are more likely not to be your fate.

But before we get to prevention, lets talk about how I got to the point where I needed to have my gum tissue replaced.  (It’s my blog and everything revolves around me, remember?  Or so I would like to believe.  Shh-This is my ego trip, so strap yourself in and just enjoy the ride while I make my point.)  If I know so much about prevention, how did I let things get to a point where I needed dental surgery?

Often, less immediate life threatening issues like dental care, are put on the back burner while things like breathing and blood circulation are addressed.  While addressing other issues, my gums were effected.  Raynaud’s Phenomenon, the cause of my poor circulation, is not limited to fingers and toes.  More attention is paid to those areas because they are the most severely effected, but again, Raynuad’s can happen anywhere there’s muscle tissue around a blood vessel.  (Scleroderma- such a giver!)

One symptom I often ignored during Raynaud’s attacks was numb tongue.  I thought it was stress, and stress is a contributing factor, but it was symptom of another problem:  Dental involvement in scleroderma.  I could feel the blood being restricted in my tongue, so I knew to take measures to bring blood back to it by moving my tongue around and warming my body.  What was going on that I could not feel, was blood flow restriction to my gums.

Most people don’t connect digestion with dental care, but it is becoming more known that digestion begins the moment we see or smell food. ( I’ll spare you an explanation, but if you need it, here it is at Kidshealth.org)  

 

Scleroderma is different for everyone, but we share similar symptoms.  Here is what happened to me:

Long before I had symptoms of scleroderma, I was very consistent about the care of my teeth.   Braces not only cultivated deep seeding hate of my orthodontist and create such a vivid memory of tooth pain that every time I hear the word orthodontist, I can still feel the pain of  metal bands being hammered into my mouth; it taught me I want to keep my teeth in my head and intact.  Which was lucky for me.  My own gum recession in scleroderma started in 1994, but I did not need my first frenectomy until 1999.    Luckily, in 1999 I met the first periodontist that taught me safe, preventive brushing that stimulated blood circulation that helped me keep my gum tissue intact.

Now, here’s the part that is uncertain: Scleroderma is a progressive disease.  These progressions can happen slowly or in the blink of an eye.  In my case, it progressed slowly, but one of the gingiva in my teeth seemed to recede overnight.  It probably didn’t, it just felt like it because there is so much to keep an eye out for in a progressive disease, I can only equate it to playing bingo with 20 cards.  Before you know it, Bingo!  -It’s time for a procedure to fix it.  Good times.

The frenectomies and prevention helped, but the inevitable came.  I had my first gum graft in 2001.  The Veteran’s Administration covered my surgery by a periodontist in private practice.  (I love my socialist health care.)  The same doctor who had been doing my frenectomies and teaching me about prevention (also covered by the VA) did a wonderful job harvesting connective tissue from my upper pallet and attaching the tissue.  It was a success and the site is still thriving today.  The second one I had was at the VA hospital.  All VA hospitals are teaching facilities and there was a periodontist on his internship there.  He too did an excellent job.  This third one was sent out.  The periodontist at the VA this time wanted the dental school to work on it.  He felt they could better accommodate me.

Now, you may be thinking, “Dental STUDENTS for oral surgery that may have difficulty healing?!!  Are you high, Karen?” The answer to both questions: Yes.  And not as far as you know.

First of all, students are a joy to work with.  They have fresh, open minds.  They want to find solutions, not just because they have to be highly competitive, they also care and most important: they are not afraid to ask questions of the patient or those who are teaching them.  Everything they do has to be approved by a teaching physician.  With medical students we get the best of both worlds:  Inquisitive minds and years of experience from their teachers.  And it is not an uncommon experience to teach something about a rare disease to the overseeing physician with years of experience.  Most of them WANT to learn, but there is always the exception.

There was this time a doctor was convinced I had gout during a hospital stay.  He was a podiatrist who had a group of students he was trying to show that I was nuts and had no idea what I was talking about.  I may be nuts, but I new what I was talking about.  I requested to see a rheumatologist in front of his students.  After taking my request, he made some comment to his students that it would be a waste of the group’s time, but he had to humor me because I requested a second opinion.

The on-call rheumatologist came in to see me.  He agreed I had an infection that was probably a MRSA flare, which had been clearly documented in my medical history.  An hour later, he stopped by with the rhueumatolgy department head, who knew me as an outpatient.  He concurred with me and the rheumatologist on-call.  I was taken off of the podiatry service and a rheumatologist was now overseeing my case.  It’s a common glitch in hospital care.  If you have a heart attack, you see a cardiologist.  If you have a swelling in your foot, you see a podiatrist.  My  experience has been that they address the feet separately, instead of as part of a whole.  This is changing by the way, but apparently the podiatrist overseeing my case did not get the memo.

The next morning, the podiatrist came back with his gaggle of students.  Unfortuanly for him, it appeared he did not see that my chart had been updated.  As the students donned their protective gloves and masks which is protocol for patients with MRSA, a student read from my chart that my diagnosis was not gout, but cellulitis and most likely MRSA.  The resident was quiet, so I asked if he had any questions for me about scleroderma.  (Okay, that was kind of an ego trip, but I did warn you.)

Back to my latest dental adventure:  I have no problem working with dental students.  Honestly, I work with students  whenever I can.  I met the doctor who would be doing the procedure at my first appointment at the dental school.  She is a graduate student and I think she and the others I met will make great practitioners, because they are already great practitioners as students.

What’s really cool about students is that they have to evaluate everything with a full exam.  They have x-rays and records to go from, but they do not just jump in, they take their time.  My doctor did a wonderful job on intake.  She had questions for me and the resident who was overseeing her work.  And because I am 42 now and have the jaded perspective of age, some of these students I just see are adorable- which I hate to say because I don’t want to discredit their professionalism with their adorableness- it’s the exact opposite.   It’s their youth, enthusiasm and natural curiosity that inspires me.   Not only do I feel encouraged to go forward to the procedure, I feel inspired to learn from them; share what I know with others in early stages of scleroderma, and other diseases that effect gum health.   The brushing techniques I have learned, I teach my son.  I remind him that pretty teeth are of no use if they wont stay in your head, so take care of your gums.  This last procedure, hasn’t exactly stopped him from prying Legos with his teeth, but the seed has been planted and I catch him stopping himself.  Yes, these students not only teach me about gum health, they are teaching me ways to scare the hell out of my kid so he continues to have healthy gums.  Winning!

So, back to my procedure.  I did not eat anything but a protein shake for my procedure at 1pm.  I have Barratt’s esophagus, reflux from hell and my epiglottis has been on hiatus since the 90’s, so preparing to be in a reclined position is of utmost importance.  My only regret: when the doctor asked me if I would like to use the bathroom before the procedure began, I should have said yes.  The lesson: When anyone asks if I need to go, I make a trip whether I need to or not because they know something I don’t regarding how long I will not be able to get up.

I was in the chair for the procedure for over three hours.  My doctor (and I will be referring to students as doctors because they deserve the respect- no matter how adorable.) My doctor made sure I felt no pain.  She could tell by my body language and eventually just by looking at my eyes when I needed more anesthetic.  This procedure is done while awake.

I have heard many people say things like, “I could never do that.” or ” I would just let my teeth fall out.”  My reply:  Yes you can.  And no you won’t.  You have to do this things.  We all have to do things that seem unbearable, chronic illness or not.  I use meditation and deep breathing.  I actually fell asleep while my doctor was cutting open my pallet.  At first, I felt like a steak, but once I made a fun of it in my head, I reminded myself she has probably practiced on many cuts of meat.  She had a steady hand and I could see in her eyes that she was watching every move she made, and looking at my eyes to see my reactions as if she watched my face for clues that would indicate pain or discomfort.  Her steadiness was unencumbered by rushing to the next patient.  She took the time to adjust to working with a scleroderma patient with a small mouth, Raynaud’s and healing issues.  And really, I have been a lab rat more than once to more seasoned professionals than I can count.  The great thing about students, is that they don’t second guess.  They can’t, because someone checks everything.

Long story short: The procedure went off without a hitch.  I drove myself home, parked myself on the couch with my dogs and slept with a little help from Captain Vicodin.  I was sore, but believe it not I was not in much pain.  The next day I woke up and didn’t need anything for pain because I rested the next two days.  I rinsed all week and the following monday, I had my stitches removed by another doctor, because the doctor who did the surgery went home for Thanksgiving.  To be quite honest, had it not been thanksgiving week I would have waited to see her when she returned because I wanted her to see her work.  But the doctor who did see me did an excellent job and even put up with me panicking the next day.

I freaked out the next day.  My skin grafts had always been in a place where I could not see the wound.   So, I woke up, took a peek at my gums and freaked out. It looked like it was coming apart.  I called the school and they fit me right in for an appointment.  The same doctor saw me and an instructor checked it just as was done the day before.  They were so cool about it.  It went something like this:

“Karen how many times did you check it?”

“Not much…” I replied.

“Stop checking it.  It’s healing fine.  Parts are going to fall off. ”

There was more to that conversation, but you get the point.  I overreacted.  Luckily, I did, because on the way home, it felt like the graft totally came off.  I left it alone, then later, a foreign object feeling forced me to check it.  There was a clump of tissue that came off, stitches and all.  This revealed connective tissue adhering to my gum line nicely. Relieved, I settled in for the Colbert Report, but had to turn it off because I laughed so hard, I could feel my gums tug.  No comedy for me.

For more information about Scleroderma and dental issues please check out these links.  And when you do get to work with a medical student, for corn’s sake, don’t call them adorable!

Coming soon: Prevention tips.

Go to these links for more information.

The Scleroderma Research Foundation: Dental Problems 

What is a Frenectomy?

The Digestive System

Raynaud’s and Dental Issues

Connective tissue grafts

Scleroderma.org

 

In The Activist Spotlight, Paul Fugelsang: Trailblazing for Mental Health

 

Bonus Prompt:

Nominate a Health Activist and Share Why

I have nominated Paul Fugelsang for a 2012 Wego Health Activist Award: Trail Blazer.  I wrestled between Silver Stethoscope and Trail Blazer because  Paul is a practicing, licensed therapist in North Carolina.  He has come up with a way to help clients see therapists who will offer mental health care at reduced rates.  Paul Fugelsang recognized the  biggest barrier to mental health care in the United States is money; and he is doing something about it.  I was inspired to share his work here in The Mighty Turtle’s Fundraising and Activist Spotlight.

Those of you who keep up with this blog, know I receive outstanding mental health care, courtesy of my friendly neighborhood Veterans Hospital, but there are millions of people in our country going without the proper mental health care they need because they are not “lucky” to be a service connected disabled veteran.

People go without because they fall through the cracks.  They make too much money to qualify for aid and if their insurance  does cover mental health care,  it’s often inconsistent and  short term because of higher copays. There are waiting lists,  long office waits  times and some mental health clinics offered are on a first come first serve basis.  The United States has come a long way with progress in mental health care, but we still have a long way to go.  There is hope because of practitioners like Paul Fugelsang, founder of  Open Path Psychotherapy collective: A program that will connect patients with therapists.  

In Paul’s words, “Open Path Psychotherapy Collective will be a network of like minded mental health clinicians dedicated to reaching those individuals and families who are falling through the cracks. The Collective—with the support of the Foundation for Excellence in Mental Health Care (FEMHC)—will match participating clinicians with individuals in need of local, in-office mental health care—for a steeply reduced rate.” (From Interview with Kelly Carlin.)

Paul’s goal is to “Create a nationwide collective of mental health practitioners who are in private practice who all agree to see one or two low fee paying clients. A goal of 2500 sessions per week… of low fee therapy nationwide.” (As said in an interview by Kelly Carlin.)

I think it’s an excellent start to an amazing, non-profit nationwide program to help those who need mental health care and are  falling through the cracks.  How is that NOT  trailblazing?  Go now and nominate Paul Fugelsang for a 2012 Wego Health Activist Award.  Then, be sure to spread the word about the fundraising that ends November 15th.  After that, watch for the launch of Open Path Psychotherapy Collective.  Watch Paul blaze a trail to help those who seek it, get mental health care they need.

 

Scleroderma, Pulmonary Fibrosis, Sarcoidosis; Need Box Wine.

two kids buried under paper work and a lap top with the note: help me!
Has anyone seen the kids?

Well, because of my meds, obviously box wine is out of the question: But a girl can dream. (Sigh).  I set out to make this post about why a patient like me with scleroderma, Sarcoidosis and pulmonary fibrosis would attend a health and fitness convention, then I realized the answer was obvious: Health and fitness make my quality of life better.  So, if I stopped here, that would be one short post, so I will tell you more.

On September first, I made a commitment to meditate every day for 40 days.  If I skip a day; no matter what, I must start over at day one.  So, here it is October first and I’m on day one- again.  There is hope I will make it to day two tomorrow, but it’s still early, but  I wouldn’t put money on it today.  Tomorrow, that;s another story.

Meditation and Deep Breathing Helps: But you have to do them in order for it to be of benefit.
The great thing about the meditation I am (attempting) to practice , is that it involves deep breathing based on Kundalini Yoga practice.  Back when when I did yoga consistently, the type of yoga did not matter; be it Kundalini, Anusara, Vinyasa or yoga on the fly: I was breathing and moving better.  Scleroderma, Sarcoidosis and the effects of Pulmonary Fibrosis were not dominating my life.  But now, as I continue to slack in my practice, I feel the effects of fatigue.  If feels like my lungs are not exchanging oxygen as effectively as they could.  My last Pulmonary Functions test showed that my oxygen exchange improved with the use of albuterol.  Now, albuterol and I have a rocky history and although it offers immediate improved air exchange, the side effects cause other problems that keep me from breathing properly outside of a clinical setting.  The only way I can describe what albuterol does to me is this:  It’s like doing cocaine without the euphoria. It makes me climb the walls; resulting in anxiety, panic attacks, swollen thoracic lymph nodes and the problems those results cause.  This actually defeats the purpose of opening airways because those side effects cause me to get LESS oxygen into my lungs.

No Snakes On A Plane Here
By the way, I tried to find a link about pulmonary fibrosis and albuterol that would not scare the begesus out of my family.  Here is my statement to calm everyone down:  My condition is stable. Pulmonary Fibrosis is in the lower lobe of my left lung and there is a little in my right.  It may be right or left- I always get it confused, but you get the point.  I have fibrosis and restricted alveoli  due to inflammation.  My lungs are at 85%, which is not bad for someone with Pulmonary Fibrosis, 20 years of Scleroderma and let’s not forget about the Sarcoidosis.  So, please relax.  There are no snakes on this Monday to Friday plane. (Yes, there is a clean version) I’m stable, mobile and have lots of life left in me.  Okay, so now that we have that out of the way:  Because the Albuterol improved my lung function, (numbers) my Rheumatologist at UCLA recommended we try it because if it helps, it’s worth a try.

Albuterol is not my friend.  It helps me breathe better, but is counter productive because of the stimulant effect it has on my system.  I have a history of anxiety.  I used to get panic attacks so bad, the granulomas (sarcoidosis) in the lymph nodes in my chest would enlarge, resulting in restricted movement of my lungs because they could not expand.  It would happen without anxiety, but because of the right medication, my condition has stabilized. Like many autoimmune or chronic conditions, stress can cause a flare.  Sure, albuteral would improve my numbers, which would be helpful if I the side effects defeated the purpose of even taking it because of the anxiety from the stimulant effect it has on me.  Our solution to this quandary? Achieve our objective of open airways with the newer, more expensive treatment, titotropium bromide inhalation powder (brand name Spiriva).

For those of you who are not aware of the excellent healthcare equivalent to that of Dick Cheney’s: I am a 100% service connected veteran with Medicare.  That means my specialists at the Veteran’s Hospital,  consult with my specialists at UCLA because the specialists at the VA have no idea what to do with me.  They are great doctors, because if they don’t know the answer, they will find a way with a referral to a specialist outside the VA.  (Really, can you count on more than one finger how many  patients you know with scleroderma, sarcoidosis, pulmonary fibrosis who test positive for rheumatoid arthritis AND have a stable condition after 20 years (with meds)?- Me neither.)

Veteran’s can have specialists consult with specialists outside the VA Healthcare System, and because I qualify for medicare, my doctor’s visits to UCLA are 80% covered by Medicare.  Because I have no other insurance,  medicare approves many things without having to fail three times befroe getting the right treatment that’s more expensive.  Same with the VA.  The thing is, as our own advocates, we need to communicate with our doctors, encourage and by all means ask to go outside the formulary when it is necessary. (Don’t be willy-nilly about it.)  Good doctors will advocate on your behalf  to go outside the formulary  Restrictions, of they have the evidence that skipping formulary treatment  will avoid unnecessary complications.   This is where being your own best advocate, well read and have a great communication with your own medical team is priceless.  (Nerds. I guess I will have to write how to get there with as few breakdowns as possible.  -Okay, coming soon- I promise!)

Okay, so what started as an announcement, has turned into an update of my meds, ways to go outside the formulary and being your own best advocate.  I hope my update- okay let’s be honest, my rant has been helpful and maybe even sparked a few questions.  I hope you will ask questions, or leave comments at the end of this post.  I am most inspired to write by anyone with questions or comments.

Now, back to my original goal of this post; my announcement.  I will be attending the Body 2.0 conference in San Francisco October 7th as a Health Activist and contributor to WEGO Health.  Body 2.0 is a health and fitness expo for anyone interested in maintaining or  improving health and fitness.  So there you go.  We tool a long car trip to get here, but that’s what’s on the agenda this week and next.  preparation, travel, relaxation then health activism.  Stay tuned to keep up to date on what’s new in fitness & health, WEGO Health and how what a patient can benefit from a health and fitness expo.  We may be fighting for our lives, but learning what we can do to maintain health between battles or during, can benefit you and someone like me with multiple diagnoses like oh, I don’t know; scleroderma, sarcoidosis, pulmonary fibrosis, contracted hands, limited range of motion… Do I really need to keep going.  Just stay tuned, and if interested, visit WEGO Health if you would like to attend Body 2.0, test some products or learn from health activists.

To keep with the theme of fitness for Body 2.0, There’s a new version of Ice, Ice Baby for Zumba.
I thought you might enjoy Jim Carrey’s version from In Living Color 

 

The Purpose-Free Driven Day

This morning, I felt unusually fatigued.  I had no energy.  My mind said go, my body said no.  So, I pondered the cause of today’s  fatigue with some questions.

Lounging is not a crime!

Were my lungs exchanging oxygen properly?  I breathe easier after taking viagra: did I take it? Then there’s  Pulmonary Fibrosis because of scleroderma and/or sarcoidosis: because really, who the hell can even tell the difference between the symptoms?  Okay, I  know it can be done if  I gave myself a pulmonary functions test every morning; but I don’t have that kind of time; there is no such thing as a live in respiratory therapist and if there is, I never want to know.  Was my Pulmonary Fibrosis getting worse?  Then I remembered I was breathing excellent yesterday, so that wasn’t it.

Maybe it was a football hangover from the Packer’s game last night.    I’m no expert, but that was clearly an interception.  That was a “hug” not a touchdown!  I was glad my son was not present so he didn’t witness my lack of creativity as I relentlessly hurled foul language at my unsuspecting and innocent TV machine.   I thought about it some more, and realized  that was a reach as a reason for my fatigue.  The big picture is that  it’s just a game.  And although the horrible call effected the outcome of the game and placed my beloved Packers in second to last place in their division, it did not warrant the kind of anxiety that would make me feel so exhausted, so I moved onto the next scenario.

Yesterday was port-o-cath flush day.  Between infusions, I have to drive 46 miles, one way, to get my port flushed to avoid  clotting.  Let’s call it Port Maintenance.  I was exhausted after I got home and even took a short nap after the drive.  Heparin is injected into my port at the end of my flush, so I wondered: Could that small dose of heparin make me tired this morning?  No.  It was inconsistent with past flushes.  The low dose of heparin does not effect me in that way, why would it start now?

Then, I did something.  Something I had done before, but changed my view about doing it.  Isn’t reality about how we view things anyway?  Sure grass is green, but what if I was color blind?  The grass would still be grass, the color green would just look different to me because it would only pick up the hues my cones could pick up, right?  What is this “something” I tried?  It’s called rest.

Yes, I have rested before: usually because of something going on with the progression of scleroderma or sarcoidosis; some kind of weird infection with a MRSA kick; a flare of some kind; or an injury on the verge of infection.  After almost twenty years since my first diagnosis, the possibilities are limitless.  But what if; and I mean a big IF here, what if I just took the day off?  What if I just rested on the couch in front of the TV?  No computer, no phone within reach and most of all no guilt: just a purpose-free day.

Why not?  Why not have a purpose-free day?  What’s with all this pressure to be purpose driven?  Everyone’s life has a purpose whether we are driven by it or not.  So, I removed the purpose from my day and more important, I removed the guilt.  What is with me and guilt?   Why not live a day without it?    When ever I do rest, I give myself guilt.  Of course, I must blame my Catholic upbringing  for the gift of guilt, but honestly; it’s time to let that guilt go, stop blaming a faith and just go about my day: purpose-free.  My guilt is something that I put upon myself.  I need to stop blaming all of Catholicism because blaming takes work and work requires a purpose and the goal here is to be purpose-free.

What could possibly go wrong?  There are no lives on the line.  For Christ’s sake, I’m a Buddhist  and it was time for me to capitalize on the idea there is  “no known Tibetan word for guilt” (The Art of Happiness).  Okay, so I identify more with Zen Buddhism, but let’s not overcomplicate things.  Let’s leave the overcomplicating to that narrative voice in my head.(Please and thank you!)

So here I am at the end of my purpose-free day.  I have to admit, it was a great day.  I took a nap on the recliner.  I took a nao on the couch and even watched Caddyshack.  My purpose-free driven day was a success.   After this post,  I’m ending my day with a little meditation; a shower would probably be a good idea, and I will read a book unit I fall asleep.

Funny how I managed to have a successful purpose-free day, yet found motivation to write a post.  I’m not writing this post out of guilt.  I’m writing this simply for fun. The fact I have scleroderma and  sarcoidosis and pulmonary fibrosis is not fun.  They are just a part of me.  I am not them.  They do not define my purpose or need to create.  It feels good to express myself.  I use my experience with Sarcoidosis, Scleroderma, pulmonary fibrosis, Raynaud’s and anything else the world throws at me the way an artists uses colors in a painting.   I suppose that’s why expression is referred to as art.  I’m not saying my posts are a work of art, but I am making something with my words.  Writing is my way of finger painting.  At times, it’s messy but  it’s evidence of my existence in this plane.  Dare I say my “Special Purpose”?  Na, too easy.  I’m just going to enjoy it.   I had a day with no guilt and, I feel good.  My little something for the effort: “So, I got that goin’ for me:  Which is nice.” 

 

Hitting My Wall And Breaking Through

In June, I hit the wall*.  It’s not my first wall, and it won’t be my last, but I have broken through this one, brick by brick.   I hit my wall in June after a personal disappointment  and  became less active in social media.  Not as a blogger, but as member of the community.  I had given up on some goals I had originally set and  I couldn’t shake the feeling I had nothing left to offer, until this past Sunday. September 1st, I started a morning routine that I have committed to doing for 40 days.  It’s some deep breathing and mediation.  (And yes, I have had to start my 40 days over after skipping my third day; and yes I will be blogging about that once I complete it.) Back to my point: Sunday morning, I opened my eyes at the end of my routine and my answer was staring me right in the face.  It was a dry erase board filled with ideas, topics and goals on it.  I realized I was not disappointed because of what happened.  I was disappointed because of what had not happened.  This dry erase board was crying out to be read.  These were my ideas and my stranded ideas had been subconsciously begging me to release them from their two dimensional prison.  (Cut to Superman 2 and those villains hurling through space in their triangle.) So, I’m setting them in motion.   First, I added another FaceBook page, The Mighty Turtle That Could. It’s entirely devoted to activity.  Not all patients are into or able to do activities so I made it separate.  So far, I have been the only participant, but eventually, someone else will share.   In addition to my Facebook page, I added an online publication of the same name.   My original idea was a page to get patients moving, but I remembered not all patients should or can move; so, I made it about activities.  This could be just some simple deep breathing, “head bopping”(Lexie) to some music and of course exercise.  I want people to share their success, goals

If you are able, you can share this publication with friends and family through social media like Facebook, Google+, Twitter, Linkedin and more.  By sharing, you can do more than just raise awareness; you can help patients, family members, friends and caregivers who feel isolated find others who are in the same boat.
My experience with social media has shown me I am far from alone with scleroderma, sarcoidosis, depression and coping with progressive degenerative diseases.  My very first friend with scleroderma, I met on Twitter.  She lives in Denmark and I am close with  Another, in Indiana.  We are all truly in this together, and there are no geographical boundaries, thanks to social media.

So, as the bricks fall from my wall,  I have accepted I do not type as fast as I can think.  My thoughts flow through my hands as they have always done, so voice recognition software is not an option.  I suppose it could be if I tried, but it makes me feel good that I can still create with my hands.
Thank you for continuing to read this blog.  I hope you will visit other writers on my blog roll and www.sclerodermablog.com Reading the blogs of other patients and topics other than Scleroderma and Sarcoidosis not only helps to raise awareness, but reminds us we are not alone and we are not our diagnosis.
If you blog and you would like to add your post to The Mighty Turtle That Could publication or find one you would like me to include, contact me through FaceBook or Twitter
*If you are unfamiliar with term, “Hitting the wall.” It’s a term most often used by athletes, but it can be applied to personal ambitions as well.  In this scene, from Run Fat Boy Run, Simon Pegg’s character is brilliantly shown breaking though his wall near the end of a marathon. Here is the set up:  His character is not a marathon runner, but runs a marathon in attempt to win over his former fiancé he left at the alter years before.  Before he busts through his “wall”, Pegg’s character has to face his feelings.  To me, it is a very powerful scene about how no matter how many people we have supporting us, we still feel alone.  We need to face our fears and feelings we have stuffed in order to feel connected with those supporting us.   Click Here to watch.  Please comment if you have felt this way.